X-rays and pin turning

It has been a little over 2 weeks since the surgeries.  Eloise is progressing very well.  We had our first follow-up visit last Thursday.  Here is the x-ray of her tibia and fibula.  As you can see, she is getting some length!  So far, she has added 1cm to her tibia and fibula.  The space that you see is actually soft, liquid bone that will harden in the next few weeks.  Dr. Paley is projecting 5cm of new bone growth throughout the lengthening process.

You can also see the pins going through both the fibula and tibia in the x-ray.  These pins come out of her leg and are attached to the external fixator.  The fixator is equipped with 6 struts that must be turned in order to separate the bone.  A computer generated program tells us which number the strut is supposed to be on each day. The strut below is strut #6.  As you can see on the sheet, strut #6 should be on 106 on day 12 (today).  Tomorrow we will turn it to 107.

Occasionally, the turning of the pins causes Eloise some pain.  But overall, her pain level has been very low.  We have not given her medication in over a week.

Eloise has also been doing very well with her walking.  She is even walking on her own with the walker.  Big brother Charlie has been cheering her on!!

First Steps!

Eloise took her first steps at therapy on Friday.  We are so proud of her.  She is doing better each day! And Charlie made it down yesterday.  Eloise was so happy to see him (and so were mommy and daddy).  Hope you all have a nice weekend.

Therapy

Sorry it has been so long since my last post.  Things in West Palm are progressing well.  Eloise is going to therapy 5 days a week for an hour a day.  We also see the orthopedic specialist who checks her blister that formed around her incision.  He is not worried about it, just monitoring it until it pops.  Each day seems to get a little better for Eloise.  The first 3 days of therapy were tough.  Today, however, was a lot better.  During the stretching part of therapy, Eloise hardly fussed at all. She is still fighting the weight bearing exercises, but I think that will get better by next week.  Here is a picture of her putting some weight on the left leg.  We are thinking it will take a few more weeks until she is walking.

Overall, her mood is slightly improving.  She is still not a fan of strangers because she thinks every new face will inject her with something or twist her leg.  But she has her moments of laughter.  I am sure it will get better once Charlie is with her.

Another milestone we hit this week was bath time!  We are finally able to get the fixator wet.  We can't submerge it yet, but she can take a shower.  We decided to put a small chair in the tub as it seems to be the best way to get her clean.  She is not a fan!!!

We all are adjusting well to our new routine.  We are so excited to see Charlie tomorrow!!  He arrives with Oma and Pawpaw at 11:00 am!  His bed is ready for him at the Quantum House.

Quantum House

We moved into the Quantum House on Sunday.  The Quantum house is similar to a Ronald McDonald House.  It is located on the hospital site and can house 10 families at a time.  We will be here until February 1st.  Some of the great things about it are

- we can walk to our therapy appointments everyday
- they have a huge playground outside which will be great for Charlie when he gets here on Friday
- other families with similar conditions are staying here so we get to share our experiences with them
- the volunteer work in the community for the Quantum House is amazing.  Every night a different group comes over to fix dinner and most days there are crafts or other activities that volunteers put on (today was a visit from a few companion golden retrievers).

Of course, there are privacy issues as all 10 families are sharing a kitchen, living room and play area, but we are definitely enjoying the experience.  Here are a few photos:

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Info

As we transition from surgery to rehab, I wanted to explain in more detail about Eloise's procedures.  The first two surgeries she had last week were on her left leg.

1.  Ankle surgery - Eloise's ankle was maloriented.  Her talus bone and calcaneus bone were positioned next to each other instead of on top of each other.  Here is a picture of a normal foot.  Basically, Dr. Paley had to separate the bones and re-position them on top of each other.  He had to place wires through the heel to secure the bones.  These will be removed at some point in the future.

2.  Leg lengthening - Because of the fibular hemimelia, Eloise was born with a partial fibula bone in both legs.  However, the left leg was more severe than the right.  This caused her left leg to be shorter than the right.  Leg lengthening of 5 cm on the left leg was needed to get matching leg lengths on both legs at full maturity.

The fixator you see on her leg is needed for the lengthening and straightening of the tibia bone.  Dr. Paley broke her tibia bone and slightly separated it.  He then put screws in her leg that connect to the fixator.  Each day we will turn the screws slightly to separate the tibia bone.  New bone grows in the separated area.  The fixator will be on her leg for approximately 5-6 months.  She is allowed to put weight on it now but is a little apprehensive.  It will probably be a week or so before she is walking on it.



Dr. Paley and his staff are truly amazing.  Most of the kids here would be left with prosthetic legs if not for him.  We are truly blessed to have found him.

We move into the Quantum House tomorrow.  This will be our home until February 1st.  It is similar to a Ronald McDonald House and is on the grounds of the hospital.  We will share the home with 9 other of Dr. Paley's patients.  Will post some pictures tomorrow.  Hope all of you are doing well!

HOME!!

We finally made it home!  Or should i say, the Homewood Suites!!  Eloise is so happy to be out of the hospital. And so are Mommy and Daddy.  Her pain seems to be getting better.  Her leg is still swollen but that should go down in the next couple of days.  She got to leave with a bunch of goodies.  Here is her new walker:

As you can see, she is a lot happier at the hotel than the hospital.

And i think we cleaned the pharmacy out!

Got a big shoe for her fixator so she can walk!

Will be relaxing this weekend because therapy starts Monday.  I have a feeling Eloise will not be a big fan of her therapists.  Will keep updating.  Hope all of y'all are doing well.  And, of course, thanks again for all the prayers and support!

Maybe going home today!

Eloise did a little better last night.  Either that or Mommy was so tired that little Eloise's crying didn't wake her up!  Dr. Paley and his entourage came by this morning and said she looked great!  He even said she was cleared to go home today (or should i say we may get to go to the Homewood Suites today)!!!  We still have to make sure her oxygen levels stay up today before they will discharge us, but i really think today will be the day!

I will let you know later today and will also send some pics of us leaving.  Here is Eloise watching Mickey and enjoying her banana.

Up and down

It has been an up and down day today.  She has been trying to sleep but between the nurses and doctors coming in every hour, it is tough for her to sleep for any length of time.  Pain is still around so she is getting the meds every 4 hours. The only things that are making her happy are the iphone and her lovies.

Mommy and daddy are holding up well!!

First night in the hospital

Eloise had a good first night in the hospital.  It is difficult for her to get comfortable so she tossed and turned most of the night.  They gave her some pain meds around 2:30 that helped her get some rest.  They will continue with the pain meds every 4 hours while she is in the hospital.  We think we will be here until Saturday.

A few of Dr. Paley's assistants have come in this morning and said she looks good.  We will even try to get her in the stroller and go for a ride later today!

Not quite ready for bed yet.......

She just woke up and wanted to watch a little tv before calling it a night.

Night Night!

It was a long day for our sweet Eloise but she did great.  Time to get some sleep!  Will be back tomorrow with more updates!  Thanks again!

Our sweet angel did great!

All went extremely well today!  Dr.Paley said the surgeries went exactly as expected. She has been handling the pain pretty well so far. Now it is time for recovery!  And I think she will love her new jewelry!  Thanks again for all the love and prayers. It means a lot to us to have such a special support group behind us. 

Out of surgery

Eloise is out of surgery and did great. We haven't seen her yet or talked to the doctor. Should be doing this soon. Will definitely post again in the next few hours with a full update. Thanks for all the prayers and support today!!

Still in the OR

It is 2:45 and she is still in surgery. I believe they got a late start. They should be finishing up soon. Don't have any updates to report. Will write again when they call us back. 

The Big Day!

It's finally here!  We thought this day would never come. A lot of mixed feelings but we know this is the absolute best path for our sweet Eloise. We are back in pre-op. Should begin surgery in about an hour.

Ready to go!

Eloise did great at all her pre-op appointments and is ready to go!  Surgery is scheduled for 8:00 am tomorrow.  She should be in surgery for about 5 hours.  I will post updates as soon as we get information from the doctor.  Say a little prayer for Eloise tomorrow morning!!!

And, of course, she has to look her best tomorrow.  She got her first haircut this afternoon!!